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Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease
Jared Chiarchiaro1, Natalie C Ernecoff2, Praewpannarai Buddadhumaruk2
1Division of Pulmonary, Allergy, and Critical Care Medicine, University of Pittsburgh, Pittsburgh PA; Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, University of Pittsburgh, Pittsburgh, PA.
Purpose:
There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease.
Materials And Methods:
We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians. Interviews explored stakeholders' desired content and design features of a Web-based advance care planning tool. Participants also rated the tool's acceptability and potential usefulness. We analyzed the interviews with modified grounded theory and validated themes through member checking.
Results:
Stakeholders highly rated the acceptability (median, 5; interquartile range, 5-5) and potential usefulness (median, 5; interquartile range, 4-5) of a Web-based tool. Interviewees offered several suggestions: (1) use videos of medical scenarios and patient narratives rather than text, (2) include interactive content, and (3) allow the user control over how much they complete in 1 sitting. Participants identified challenges and potential solutions, such as how to manage the emotional difficulty of thinking about death and accommodate low computer literacy users.
Conclusions:
There is strong stakeholder support for the development of a Web-based advance care planning tool for lung disease.
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